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International workshop: what is needed to ensure outcome measures for Rett syndrome are fit-for-purpose for clinical trials? June 7, 2023, Nashville, USA.
Trials
December 2024
School of Medicine Depts of Pediatrics, Neurology and Pharmacology, Children's Hospital Colorado/University of Colorado, 12800 E 19th, MS8102, Aurora, CO, 80045, USA.
Introduction: The clinical, research and advocacy communities for Rett syndrome are striving to achieve clinical trial readiness, including having fit-for-purpose clinical outcome assessments. This study aimed to (1) describe psychometric properties of clinical outcome assessment for Rett syndrome and (2) identify what is needed to ensure that fit-for-purpose clinical outcome assessments are available for clinical trials.
Methods: Clinical outcome assessments for the top 10 priority domains identified in the Voice of the Patient Report for Rett syndrome were compiled and available psychometric data were extracted.
Validation of the Spanish Version of the Voice-Related Quality of Life Questionnaire: Psychometric Properties and Clinical Applications.
Folia Phoniatr Logop
September 2024
Department of Communication Sciences, Universidad de los Andes, Santiago, Chile.
Introduction: The present study aimed to validate the Voice-Related Quality of Life (V-RQOL), vocal self-assessment questionnaire for Spanish.
Methods: The validation and psychometric properties were developed according to the criteria of the Scientific Advisory Committee of Medical Outcomes Trust (SAC). The Spanish translation for linguistic and cultural adaptation of the V-RQOL was used.
The iCannToolkit: a tool to embrace measurement of medicinal and non-medicinal cannabis use across licit, illicit and cross-cultural settings.
Addiction
June 2022
Addiction and Mental Health Group (AIM), Department of Psychology, University of Bath, Bath, Somerset, UK.
Measuring psychological flexibility and cognitive defusion in individuals with acquired brain injury.
Brain Inj
August 2021
Limburg Brain Injury Centre, Maastricht, The Netherlands.
Purpose: Acceptance and Commitment Therapy (ACT) is used increasingly for individuals with psychological distress following acquired brain injury (ABI) in different countries. However, questionnaires measuring ACT-processes are often not validated for this patient group and need cross-cultural validation. This study investigated the psychometric properties of the Acceptance and Action Questionnaire for Acquired Brain Injury (AAQ-ABI; measuring psychological flexibility related to thoughts and feelings about ABI) and the Cognitive Fusion Questionnaire (CFQ-7; measuring cognitive defusion).
View Article and Find Full Text PDFA Cross-Cultural Comparison of the Effects of Alcohol Mixed with Energy Drink (AMED) Consumption on Overall Alcohol Consumption and Related Consequences.
Int J Environ Res Public Health
July 2021
Division of Pharmacology, Utrecht Institute for Pharmaceutical Sciences (UIPS), Utrecht University, 3584CG Utrecht, The Netherlands.
There is a growing body of scientific literature examining the effects of alcohol mixed with energy drink (AMED) on alcohol consumption and related negative consequences, such as risky behavior or negative health effects. It is unknown whether differences in cultural context may influence these AMED effects. The current cross-cultural study compared the data of N = 6881 students from The Netherlands (N = 4424), UK (N = 1594), and Australia (N = 863).
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